The next round of crazy

[Our abuse recovery guide]

Hi all.  I had 2 1/2 weeks of blessed respite from my ubpd mother as H and I and our two adult children (who live in different cities from us) flew to enjoy time together in a warm vacation climate.  A cyclone hit the day after we arrived, resulting in trees being uprooted, massive flooding, and water pouring into our condo, but despite the problems and challenges it was so much easier than being around mom.  After the cyclone passed, the rest of the trip was wonderful.  It was a mental health trip for the family.  We arrived back home 2 days ago.

Mom has been receiving drops for her eyes as a treatment to prevent blindness after an infection resulted from a macular degeneration injection.  She was stable and the eye was recovering well when we left on our trip.  She's 85 and has a litany of very complicated health issues apart from the ubpd.  She lives independently.  I am an only child and there is no other family.  She is fragile physically as well as emotionally.  She's had many falls, and I have had to resort to home care assistance, as the abuse I was subject to while trying to care for her in her convalescence was too much.  Her macular degeneration treatment was drops 4X/day, and that was too much for me to manage on my own and still have a life.  It would be different if she didn't abuse me.  So I advocated strongly and forcefully to get home care for her.  Where I live, it is publicly funded, and private care is not available.  I live in a small rural, and what most would consider remote, community.  She qualified for assisted living two years ago, and was offered the opportunity to go onto a two year waiting list.  She refused.

While I was on our trip, mother kept reminding us that she had to eat alone.  She told me she was running out of groceries (I do her grocery shopping but had stocked her up on everything possible before I left for 2 1/2 weeks).  When I got home and helped her put her new groceries away, I saw she still had 2 liters of milk in her fridge, eggs, fruit, and all the basics anyone would normally have.

She hates having home care come to her house to put her drops in.  I believe it has to do with control of the situation.  The drops are ordered by an opthalmologist.  Mom states that she can put her own drops in (this is laughable as she has Parkinson's, and is struggling to feed herself because of the shaking).  Home health care worker's coming to her house regularly get to know her, and see her struggles.  One time, one of them found her on the floor and called me.  She had fallen over when she reportedly bent down to pick up something she had dropped.  It is my belief that she doesn't like home health care workers coming to her house, because she can't hide her problems from them.  Anyone can see she she is struggling to cope, and if home care workers weren't coming, she could hide that "secret".

She keeps telling me she doesn't need home care any more.  I gently remind her that her eyesight is slowly returning, and then ask her if she would rather go blind.  Then I state my gratitude for living in a country where health care is possible, and people will come right to the house of the elderly, to help them.

These people are wonderful.  One of them even "sings" to her.  They are amazing carers.

The next time I see her, she tells me again she doesn't need home care any more.  Every visit is the same merry go round.

We got home from our trip 2 days ago.  This morning I received this text:

Mom: I'm allergic to antibiotic, and every time I took the ointment I got sick and one nite I vomited.  I thought I had vertigo.  That is the nite one.  I spend most of my time on the couch and sleep abates it.  My vision on that eye is pretty good.  Could you cancel the home care?

Me: It sounds like you are worried that this dizzy spell (she has suffered from Meniere's disease her whole life) is related to the ointment.  The vertigo you've had would be difficult.  Have you spoken to Dr ________ (opthalmologist) about your concern?  Or would you like to see Dr ______ (family doctor)?

Mom:  I was born nauseated.  But yes the ointment seems to precipitate it but it could be from movement.  I would like to forget it.  The nausea started a week ago.  I might try a gravol  today.  My advice is don't have birthdays.

An hour later she phoned me:
Mom:  I'm so sick.  I have to stop taking the ointment.

Me: Mom, you have Meniere's.  This dizziness right now is not caused by the eye ointment.  You have been taking the ointment successfully for months now and your eye sight is improving.  The dizziness is probably from your Meniere's but only a doctor can determine that.  The only way to get an appointment is to call for a "same day appointment" at 9am tomorrow.  It is already 11am today.

Do you have some andansetron you can take (it's stronger than gravol)?  

Mom: yes, but I just took a gravol, so I can't take an andansetron until tomorrow.  I can't keep going like this.

Me:  what does the nurse in you say you should do?  (she used to be an RN)

Mom: ...(she didn't know what to say to that)

She is unbelievably high maintenance.  I spent almost 3 hours on the phone yesterday arranging her medical needs and appointments and prescriptions and referrals.  She doesn't even know I did that.  She can't hear well, and her cognitive processing has declined (she has Binswangers or vascular dementia) so I don't even bother trying to explain it to her because I would have to repeat it 10 times, and she doesn't want to hear about how much I do for her anyways.

Meanwhile, it is 3 days before Christmas.  She is going to play victim (poor me) and absolutely set out to destroy Christmas.  H believes it is attention seeking behavior.  She will report she is sick in bed.  Vomiting. Can't eat (she's had an eating disorder her entire life and at a weak 100lb is deathly afraid of becoming obese).  My job is to "rescue" her.  Make all her illness and problems go away, and make her feel "better" again.  If I don't do that, I am a terrible daughter, the worst.  If I don't do that, I don't love her.  She needs 24/7 attention, and wants it all from me. 

So this is where I need this community, to stay strong.  So far, I am still feeling the benefits of having had a two week respite and vacation in paradise (and special time with our adult children while also away from her).  But she can wear me down in a moment.

Home care sees her 4X a day to give her eye treatments.  They can observe her state of wellness.  If there is a problem, they will contact me, right?

Our adult son and daughter (who both live in different cities from us), flew home with us after the vacation to be home for Christmas.  D24's bf is also flying here Christmas Eve to join us, so I am now busy with many Christmas preparations.  

We all spent time with her individually after we got home.  She got lots of attention.

But I believe my mom is self-sabotaging herself by wanting to discontinue her eye treatment.  She wants me to call home care and cancel the service.  She wants more attention from me/us.  She wants to control me, and everything around her.  But her aging and problems are causing her to lose control.  It's only a matter of time until she explodes at me, when she gets me alone.  My family knows not to leave me alone with her, but since I bring her groceries, bring her to appointments, it is impossible to never be alone with  her.

For the past 5 years with mom, there has been a crisis right before every Christmas.  

The craziness just never ends.  What mother in her right mind would demand her daughter stop the home care treatment that is preventing her from going blind?  Who does that?

[Methuen]

Hi all.  I had 2 1/2 weeks of blessed respite from my ubpd mother as H and I and our two adult children (who live in different cities from us) flew to enjoy time together in a warm vacation climate.  A cyclone hit the day after we arrived, resulting in trees being uprooted, massive flooding, and water pouring into our condo, but despite the problems and challenges it was so much easier than being around mom.  After the cyclone passed, the rest of the trip was wonderful.  It was a mental health trip for the family.  We arrived back home 2 days ago.

Mom has been receiving drops for her eyes as a treatment to prevent blindness after an infection resulted from a macular degeneration injection.  She was stable and the eye was recovering well when we left on our trip.  She's 85 and has a litany of very complicated health issues apart from the ubpd.  She lives independently.  I am an only child and there is no other family.  She is fragile physically as well as emotionally.  She's had many falls, and I have had to resort to home care assistance, as the abuse I was subject to while trying to care for her in her convalescence was too much.  Her macular degeneration treatment was drops 4X/day, and that was too much for me to manage on my own and still have a life.  It would be different if she didn't abuse me.  So I advocated strongly and forcefully to get home care for her.  Where I live, it is publicly funded, and private care is not available.  I live in a small rural, and what most would consider remote, community.  She qualified for assisted living two years ago, and was offered the opportunity to go onto a two year waiting list.  She refused.

While I was on our trip, mother kept reminding us that she had to eat alone.  She told me she was running out of groceries (I do her grocery shopping but had stocked her up on everything possible before I left for 2 1/2 weeks).  When I got home and helped her put her new groceries away, I saw she still had 2 liters of milk in her fridge, eggs, fruit, and all the basics anyone would normally have.

She hates having home care come to her house to put her drops in.  I believe it has to do with control of the situation.  The drops are ordered by an opthalmologist.  Mom states that she can put her own drops in (this is laughable as she has Parkinson's, and is struggling to feed herself because of the shaking).  Home health care worker's coming to her house regularly get to know her, and see her struggles.  One time, one of them found her on the floor and called me.  She had fallen over when she reportedly bent down to pick up something she had dropped.  It is my belief that she doesn't like home health care workers coming to her house, because she can't hide her problems from them.  Anyone can see she she is struggling to cope, and if home care workers weren't coming, she could hide that "secret".

She keeps telling me she doesn't need home care any more.  I gently remind her that her eyesight is slowly returning, and then ask her if she would rather go blind.  Then I state my gratitude for living in a country where health care is possible, and people will come right to the house of the elderly, to help them.

These people are wonderful.  One of them even "sings" to her.  They are amazing carers.

The next time I see her, she tells me again she doesn't need home care any more.  Every visit is the same merry go round.

We got home from our trip 2 days ago.  This morning I received this text:

Mom: I'm allergic to antibiotic, and every time I took the ointment I got sick and one nite I vomited.  I thought I had vertigo.  That is the nite one.  I spend most of my time on the couch and sleep abates it.  My vision on that eye is pretty good.  Could you cancel the home care?

Me: It sounds like you are worried that this dizzy spell (she has suffered from Meniere's disease her whole life) is related to the ointment.  The vertigo you've had would be difficult.  Have you spoken to Dr ________ (opthalmologist) about your concern?  Or would you like to see Dr ______ (family doctor)?

Mom:  I was born nauseated.  But yes the ointment seems to precipitate it but it could be from movement.  I would like to forget it.  The nausea started a week ago.  I might try a gravol  today.  My advice is don't have birthdays.

An hour later she phoned me:
Mom:  I'm so sick.  I have to stop taking the ointment.

Me: Mom, you have Meniere's.  This dizziness right now is not caused by the eye ointment.  You have been taking the ointment successfully for months now and your eye sight is improving.  The dizziness is probably from your Meniere's but only a doctor can determine that.  The only way to get an appointment is to call for a "same day appointment" at 9am tomorrow.  It is already 11am today.

Do you have some andansetron you can take (it's stronger than gravol)?  

Mom: yes, but I just took a gravol, so I can't take an andansetron until tomorrow.  I can't keep going like this.

Me:  what does the nurse in you say you should do?  (she used to be an RN)

Mom: ...(she didn't know what to say to that)

She is unbelievably high maintenance.  I spent almost 3 hours on the phone yesterday arranging her medical needs and appointments and prescriptions and referrals.  She doesn't even know I did that.  She can't hear well, and her cognitive processing has declined (she has Binswangers or vascular dementia) so I don't even bother trying to explain it to her because I would have to repeat it 10 times, and she doesn't want to hear about how much I do for her anyways.

Meanwhile, it is 3 days before Christmas.  She is going to play victim (poor me) and absolutely set out to destroy Christmas.  H believes it is attention seeking behavior.  She will report she is sick in bed.  Vomiting. Can't eat (she's had an eating disorder her entire life and at a weak 100lb is deathly afraid of becoming obese).  My job is to "rescue" her.  Make all her illness and problems go away, and make her feel "better" again.  If I don't do that, I am a terrible daughter, the worst.  If I don't do that, I don't love her.  She needs 24/7 attention, and wants it all from me. 

So this is where I need this community, to stay strong.  So far, I am still feeling the benefits of having had a two week respite and vacation in paradise (and special time with our adult children while also away from her).  But she can wear me down in a moment.

Home care sees her 4X a day to give her eye treatments.  They can observe her state of wellness.  If there is a problem, they will contact me, right?

Our adult son and daughter (who both live in different cities from us), flew home with us after the vacation to be home for Christmas.  D24's bf is also flying here Christmas Eve to join us, so I am now busy with many Christmas preparations.  

We all spent time with her individually after we got home.  She got lots of attention.

But I believe my mom is self-sabotaging herself by wanting to discontinue her eye treatment.  She wants me to call home care and cancel the service.  She wants more attention from me/us.  She wants to control me, and everything around her.  But her aging and problems are causing her to lose control.  It's only a matter of time until she explodes at me, when she gets me alone.  My family knows not to leave me alone with her, but since I bring her groceries, bring her to appointments, it is impossible to never be alone with  her.

For the past 5 years with mom, there has been a crisis right before every Christmas.  

The craziness just never ends.  What mother in her right mind would demand her daughter stop the home care treatment that is preventing her from going blind?  Who does that?

[GaGrl]

So frustrating...I'm so sorry.

So first thought is that you hold your boundary on NOT changing current medical care and prescription use without the approval of the supervising doctor.

"I can't change your current orders (including home health care). When do you want to see your doctor?"

I love your question about her previous nursing! Brilliant.

[Notwendy]

Often a behavioral approach is to step back and allow someone to experience the natural consequences of their choices, but an exception is when these choices lead to serious harm. This puts us in a difficult situation as we don't want any harm to come to our parents. We worried about my mother being alone- but then, we also can't be there 24/7 to make sure she's OK. Fortunately she does accept home health, although assisted living is the better choice but she refuses that.

If your mother decides to not eat for a day- that's her issue- eventually she will get hungry enough to eat hopefully- you can't stay with her 24/7 to feed her. You can bring her food or get groceries for her- or have someone else do that. But her own basic care- to eat her food is up to her.

In the event that she refuses to eat altogether, she's past the point of basic self care. At this point, it's probably possible to assess her as incompetent for self care- and she would need to be in a nursing home for that- if she's no longer mentally competent for basic self care- she's lost that choice.

Not taking her eye medicine is also in that category- as she needs it for basic care. If she's not compliant with her medication, and it's a necessary medication, she's not competent.

One reason my BPD mother doesn't meet the legal definition of incompetent is that she is able to take care of her basic needs. Even though she has assistance with grocery shopping, household tasks, and medical appointments, she takes care of her own self maintenance- feeding, bathing, dressing herself.

But I think not being able to do basic self care  crosses that line. I think the boundary is this choice- accept the home health care or assisted living. It's clear she can not be on her own without home health. Surely this is hard for anyone to accept emotionally- it is understandable she doesn't like it, but having home health assist her is in her best interest and it also allows her to stay in her own home for as long as possible. Hopefully you can hold on to this- it's in her own best interest to keep home health- as you keep to the boundary.

[Methuen]

Thank you both for your responses.

So first thought is that you hold your boundary on NOT changing current medical care and prescription use without the approval of the supervising doctor.

For sure!  Hell will freeze over before this happens.  She wants me to participate in an action that could lead to blindness.  If I don’t follow her demand, I am disobeying, and a terrible daughter.  If I was weak enough to follow her request, she could blame me for the blindness.  It’s always lose-lose with a pwbpd. But for sure I will not be canceling anything.  But the craziness has a spin off effect.

NW, thank you for providing clarity of the situation.   Being in the center of the storm I can only cope moment to moment with all that is going on.  But you articulated what I should have known.  Thank you for that.  It is a big help. 

The next challenge will be to have the medical community see it.    There is an inherant reluctance on the part of the medical community to see this.  Just getting appointment times to have conversations is a challenge.  It will be a process.

Thank you for the support.

[GaGrl]

It is a process. Fortunately, my mother was usually realistic about what she could and could not do. She had already quit driving before her ophthalmologist told her in a regular exam that if she was still driving, it was time to stop.

What was more problematic was when she wanted to do something that was no longer possible, and we said no. I did figure out how to take her through the Christmas Lights garden with a wheelchair (and I was wiped out by the time we finished!).  But not being able to go to the beach with us two summers ago resulted in a verbal pout, then silent treatment -- mind you, there was no elevator and 20+ steps up to a house on pilings.

Our progress went from a housekeeper once a week, to adding twice a week, then thrice a week caregiver responsibilities when my dad started weakening (our friend is a CNA and able to handle many medical needs). When Mom moved into our retirement house, we renovated for handicap needs in the bath and kept the care giving at 3x a week with all doctor appointments on those days. She wore a medical alert bracelet. When we retired and moved in, Mom had 24-hour supervision. After her fall and diagnosis of a cecal mass, the care giving was upped to five mornings a week and a sitter on Saturdays (so my husband and I could get out and do errands, etc.). In the last two weeks of hospice, her caregiver came in the evenings also to prep for high time -- it was too much for one person at that point, because Mom had no ability to help.

This all happened over five years. I look back now and see the process as it unfolded. Your mother is still at the occasional home health/care giving phase, but it sounds as if she needs more.

I don't see her agreeing to more home health care unless her medical professionals hear what is going on with (lack of) personal care ability, eating and nutrition, and her tendency to fall.

[zachira]

One rule of life is circumstances change. It sounds like your mother is no longer able to take care of herself and there is no way you can discontinue the home health care. It seems you have come to the point where you can tell your mother that she either agrees to continue with the home health care or she has to go to an assisted living/nursing home. The hard part for you is possibly how your mother always seems to find something mean to say to you to dump her unhappiness on to you. No doubt the home health care agency has plenty of documentation on the care they are providing your mother and you may be able to get documentation from them that your mother is no longer fit to take care of her basic needs on her own.
Glad to hear you took your well deserved vacation with your family!

[Methuen]

You are right Zachira.  The question is, “what does our public health system consider being able to take care of herself?”

Yesterday I went to her house to bake a Christmas braid that she has traditionally made for 30 years, and we’ve all enjoyed as part of xmas brunch.  She can’t do it anymore.  She cant stand to do the mixing.  She struggles with measuring because of her Parkinsons.  When she walks across her kitchen, she forgets what she went to do when she got there.  She drops things.

I mixed and made the bread.  She helped where she could (she zested some of the lemon but I finished it).

She is reporting dizziness and nausea and vomiting.  She was moving around while I was there with her walker, but a few hours after I got home, I got a text to try again to call her doctor, because she was “sicker than she’s ever been”.  But everything is an extreme with her always.  She wasn’t nauseated or vomiting when I was there.  Her andansetron script was from 2018.  That was the last time she reported nausea and vomiting symptoms like this. I have been through this with her before.  The crisis lasted months, and she wore a gravol patch for about two years. The doctor couldn’t find an actual cause.  Many tests were done.

When I was at her house yesterday, she looked unkempt.  Her hairdresser comes to her house, but hasn’t been there for a long  time.  Her appearance is most important to her.  I anticipate that she will be sick for Christmas day, but can’t help but wonder if part of it will be an excuse because she doesn’t want to be seen by her grandchildren and the new boyfriend on Christmas.  She has always judged people by how nice they are, by their appearance.  

Her Dr’s nurse couldn’t give me an appt until Dec 30, but she said she would ask him to call me at the end of his day today.

I have googled BPD and nausea and dizziness.  It seems there is a correlation.  Mom’s “dizziness “ started while we were away on holiday. I can’t help but wonder if they are linked.  I have no doubt the symptoms she is feeling are real to her.  

Traditionally, one of us drives to her house, picks her up Christmas morning, and brings her to our home for the day.  I anticipate her saying she is too sick.  Then what to do?  Leave her at her house?  Our adult Children and the new boyfriend are at our place for Christmas.  Do we carry on with our day?  I can’t move the turkey dinner to her place.  It just isn’t doable.

I cant help but wonder if the timing is deep psychological attention seeking, or just bad luck.  I just know that life with her has always meant a crisis.  Her crises always affect me, and I am expected and obligated to respond  to them as the daughter

Feeling kind of unsure here about what is right or best..

[Methuen]

I should also mention that the home health care is only to give her drops for the eye 4X a day.  Once she doesn’t need drops any more he home care visits will cease. 

I had to fight and beg to get that, as they are short staffed.  I was initially ignored, then told no, and ended up going  in person to  plead my case.  Family is expected to do it when the public health system doesn’t have capacity.  They relented, and allotted 15 min 4X per day for the drops, but I am afraid of getting the call that it’s being discontinued anytime.

[zachira]

Methuen,
What to do about Christmas? My heart goes out to you. Surely there will be some drama at Christmas, and how you do what is best for everybody in your family and practice self care is hard to determine ahead of time as you don't know what the crisis will be or if there will be one. It sounds like you know that you will be stressed out worrying what could happen. You deserve peace and happiness for the holidays.
It may be time to consult a lawyer to determine what steps you would have to take to be fully in charge of your mother's medical care and if indeed you would likely get it. You won't know until you ask.
I hope you are mostly able to focus on enjoying the family you have created for yourself during the holidays. Is there anybody you could hire to stay with your mother for the holidays that would allow you have the time you deserve with your children and husband?

[Methuen]

Is there anybody you could hire to stay with your mother for the holidays that would allow you have the time you deserve with your children and husband?

Thanks for the well wishes Zachira.  As to your question, where I live, no one has even heard of this.  Her friends are burned out, or elderly themselves.  I don’t know of anyone personally with the skills or apritudes to do this, or the desire.  We have public health care, so there is no firm of qualified people to hire from privately.  I was lucky  to get home care for 15 min 4X a day just to give her eye drop medication to prevent blindness.

Today we had a breakthrough of sorts.  I called her this afternoon to check in, and tell her I had arranged a phone appt with her Dr for late afternoon today.  During the phone call, I used every tool I know to navigate a conversation that led to her agreeing that her anxiety was causing her symptoms.  D24 was already driving to her house when that call happened, and stayed with her until I arrived for the Dr appt via phone.  D24 had helped her prepare a script to organize her thoughts.  Mom verbally acknowledged that her anxiety is the worst its been in her life.  She’s stopped eating, can’t sleep, she’s isolating herself, and today said she didn’t think she wanted to come for Christmas.  At one point her blood pressure was 185, but rhen went down to 135 after D24 had been with her for an hour.  Dr is increasing her Mirtazapine dose, but because of her age and orher complicated health issues, the dose change must be smaller and incremental.  She has another appointment with Dr in a week.  That’s probably too long, but Christmas and holidays makes getting appt times more difficult.

I speculate this increased anxiety was triggered when she lost her drivers license due to failed medical, then had an eye infection requiring home care treatment she doesn’t want, and then we left the country for two weeks of respite and our own mental health vacation.  

D24’s boyfriend arrives on a flight tomorrow.  The plan is to carry on with Christmas. Traditionally we drive  to her house and pick her up to bring her to our place for the day to have Christmas.  Today, she said she wanted to sleep in Christmas day.  This is a monumental change, as the child in her never sleeps the night before Christmas.  She has always loved Christmas.  More childish than children, so to speak.  It’s a terrible situation to see her like this.  

She has anxiety, depression, ptsd, adhd, dementia, bpd, pathological demand avoidance and that’s just the mental stuff, pretty well all undiagnosed.  Her physical problems are many,and serious.  And her personality has led to this moment.

She’s said and done terrible things which have affected me over a lifetime.  Damage has been done but I am working through it as best I can.  But it doesn’t make it an easier to know that she is languishing and suffering in her home at Christmas, even if that is her choice, and somewhat of her own making.  It’s the trained guilt reflex, and trained to rescue reflex I’m struggling with.  She raised me to be her emotional caretaker, and although I’ve done work to let go of that, I’m conflicted.  I somehow have to still find joy with D24 and bf, and S26 and H over Christmas.  I can’t let her take that away from me.

[eaglestar]

With regard to there always being drama at Christmas, amen to that. It is how I grew up also. Despite that fact, it's still by far my favorite time of year. Probably because my mother created drama around literally every major day, including my birthday, so I suppose I couldn't learn to hate every holiday on the calendar, haha!
I think it comes down to attention seeking behavior, which you all realize. But as Methuen said, when you're in the center of the cyclone, it's hard to see it. All you can see is the storm around you. I've had moments of clarity these last few months to see the pattern and understand the fact that this is a mental disorder my mother has, not anything I've done wrong. It still hurts in the moment, though. Methuen, you have my support! Stay strong. You'll get through it!

[Nopuppets]

Dear Methuen, I can tell you have a very kind heart.  It’s very, very hard dealing with an aging parent with a personality disorder, and then when you add multiple medical problems to the list it can seem almost impossible.  I’m certainly not an expert, but from my experience in dealing with my mother, ubpd, Christmas is the toughest holiday.  If we don’t do exactly what she wants, there will be FOG worse than San Francisco.  This sounds exactly like what your mother is trying with you to get her way.  I agree with the other comments above, enlist professionals to try and either make the home health care a more permanent situation, or perhaps she can no longer make decisions for herself.  In either case, you are important and your boundaries and mental health matter!  It has helped me to make a list of points to use with my mother and stick to them. Many of these you suggested to me and have been very helpful 

I also have found when I can sense an explosion coming it has helped me to jot down my speaking points because it reminds me I have control over my part.  And it helps me not panic when she starts to unleash the cyclone so to speak.  Perhaps re-visit boundaries and what could work for you to make you feel safer and more at peace.  Because what she is doing to you is not right at all, and ultimately is not helping herself anyway.  I do hope you will be able to find some time to truly enjoy the holiday with your family as you deserve that special time 

[GaGrl]

Is your mother saying she doesn't want to get up early and come over for a gift exchange, or doesn't want to come at all? Perhaps this is a year for a compromised let her sleep in while you have the gift exchange, then have someone go help her get ready for the dinner while you prep food?

I know my mom became slower and slower at getting up and moving in the mornings.

[Methuen]

Thank you everyone for your thoughtful and supportive replies.

H and I have known for a very long time - years- that mom isnt coping living independently.  She hasn’t coped since my dad became ill which was back in the early 2000’s.  She couldn’t handle the stress of his diagnosis or his illness (Parkinsons and dementia), and then when he died I theorize that her sense of abandonment was retriggered, and her bpd traits redoubled, but I became the new dumping ground with dad gone.

A series of bad decisions (talking a surgeon into giving her 3 surgeries -2 hips and 1 knee -in 3 months) followed by a subsequent back surgery, and never following through with any physio to rebuild any muscular strength has led to extraordinary weakness.   She was always proud of her ability to get what she wanted from the surgeon.  She told him whatever  he needed to hear to pursuade him she was a good candidate.  The weakness has led to repeated falls.  She is so weak now she doesn’t even have the muscle tone to sit up on a couch.  She is so slumped, she looks like she could slide off the bottom of the couch.  This weakness has been combined with a lifelong eating disorder.   But the physical symptoms from stress cause her GI problems including stomach, intestinal, nausea and dizziness, which affect her appetite.  Back in 2016 she struggled with nausea and dizziness for over two years.  Her Dr tested her for everything, but ended up treating the symptoms because mom couldn’t tell him the truth or accept her mental illness.  On the one hand she would tell me she’s lost 20 lbs and has to be able to eat again.  She tried to make it my job to fix her.  On the other hand she would tell the support worker liquid diet drinks for old people had too many calories.  During the wait for her 3rd booster in the waiting room, she said she sure didn’t want to be obese like some of the other people in the room.   It was always remarkable to me that on the one hand she would be fearful of not being able to eat ( from nausea which was a symptom of anxiety), but on the other hand refuse to eat ( the eating disorder).  She could never connect the dots between her different issues. Sometimes it was like she had multiple personality disorder.

Their whole married life my dad supported and suggested counseling.  She refused. Another bad decision.

At 85, mom is failing.  In her aha moment yesterday, she was relieved to have an answer, that it was anxiety that was making her feel so terrible.  I couldn’t believe it was happening that she could accept her own anxiety- she has always fought against having any mental symptom in the past.  After the Dr phone appt was over, there was a plan, and D24 had left to go home, I could see the depression taking over from the initial sense of relief.   I said a few kind and positive things, and then left to go home for supper.  

She has determinedly, aggressively, and angrily refused assisted living for several years now.  Another bad decision in my mind, as she is now alone without the medical supports and aids she needs for her emotional and physical health.  

It was all preventable, if not for the bpd.  I have watched  it all unfold for the past 18 ish years.  And have been helpless to help her, with the bpd, and her refusal to seek help.

It’s been a brutal journey as she has gone from Queen to waif.  The medical system here is at capacity, and change happens at a glacial pace.  I don’t know which will come first - the medical system getting her the support I can see she needs, or a continued decline and failure until death.

For years, I have done what I can, and mad disclosures to her family doctor, and supervisors and consultants in home care.  They have all been supportive of me.  But they have had to balance the info in my disclosures, with mom’s right to autonomy and her own couces.  She has been the driver of her own bus.  

Mental health is brutal - for the person and the family.

She needs either assisted living, or maybe even long term care.  H and I think she could have thrived in assisted living because she would have had social interaction, and she was always a social butterfly.  

Now I suspect she will refuse to come for Christmas because she is severely depressed, anxious, and doesn’t want to be seen without her hair done (she’s been sick so her hairdresser couldn’t come to her house).  

Is your mother saying she doesn't want to get up early and come over for a gift exchange, or doesn't want to come at all?

We’re going to find out.  I didn’t want to press it yesterday, because she was in a bad place mentally, and I knew what answer I would get.  We’re going to send S26 over there today (golden child) to do his magic.  

I know I’ve done all I could to support her.  I also know she controlled her own destiny with her choices.  It’s just sad and wretched to watch it unfold over two decades, and come to this.

Now I must find the strength to be happy do my children can still enjoy Christmas at home.

Sorry for the ramble - mostly trying to process.

[zachira]

Many of us will be thinking of you at Christmas hoping there is no major crisis with your mother and you are able to enjoy the holidays with your husband and children.
I hope I don't offend you with these thoughts. From past experiences with my own relatives, I know that an in-home death can trigger an investigation, which can be very upsetting especially when you have done everything to get your loved one the care they need and the most optimal care is refused. It may be time to sit down with a lawyer for a consultation about what you can do to protect yourself from any kind of investigation if your mother were to die in her home and to find out what you may be able to do to get full legal control of your mother's medical care.
I am guessing that some of your problems with getting home health care for your mother are due to the limited medical resources because of the pandemic and the medical system of the Canadian government, which has many positive aspects that we are lacking here in the United States and not due to the fact that your mother does not need the care or has been actually determined to be able to take care of herself.

[Methuen]

I hope I don't offend you with these thoughts. From past experiences with my own relatives, I know that an in-home death can trigger an investigation, which can be very upsetting especially when you have done everything to get your loved one the care they need and the most optimal care is refused. It may be time to sit down with a lawyer for a consultation about what you can do to protect yourself from any kind of investigation if your mother were to die in her home and to find out what you may be able to do to get full legal control of your mother's medical care.

I am listening.  I’m sitting with this.  You could never offend me Zachira.  My situation is a bit different because I have no siblings, much less disordered ones, to accuse me of the heinous thing you are speaking of.  Your story with your family, and ongoing entanglements has been horrific. Their behavior put you in a position of needing a lawyer.   My experience  has been different because I am her only family so there is no triangle going on.  My problem is that I am stuck with her, but the medical system still deems her to have capacity to make her own decisions.  All her mental illnesses are undiagnosed because she refused to acknowledge or get help with them all her life.    My horror has been navigating her disorder alone (except for a supportive H) while slowly learning how to take care of myself.  However, I am well known by all her friends who are good people. They all like me.  They just have no inkling of how she treats me.  In my community, I have a good reputation through my career work, and many people know me.   My husband had the same career and was adored.  So I don’t feel the same threat of being accused of heinous things, that you have experienced.

I have also fully disclosed the dynamic to my family doctor, and he has suppoted me by not releasing her from hospital into my care when she demanded he do just that ( telling him I would look after her).  I have also fully disclosed the dynamic to her case manager for home health care, and to an elderly services consultant who works in the same unit.   The latter has been most helpful in prividing tools and supports to navigate a relationship with her.  Those disclosures are probably the only reason I was able to get home health care for mom with regards to getting her medication for her macular degeneration 4X a day ( even when the system was over capacity due to the pandemic).

Still, I hear you.  Danger ( both expected and unexpected) always lurks when there is a pwBPD involved, and so I am sitting with your advice.

I appreciate all support.

[zachira]

My relatives had nothing to do with an outside investigation being threatened. It was all about the laws and what the procedures are when there is an in-home death. One of my relatives husband died in the ambulance after being taken from their home. For several days, the widow was terrified of what an investigation would find, after she was told by the official in charge that there would be an investigation of what was considered to be an in-home death if a certain doctor did not sign off on it. The deceased was a terribly abusive man and regularly blamed his wife for how unhappy he was. The deceased was elderly, had diabetes, morbid obesity, and a well documented medical history.
I have found that lawyers know things we don't and can come up with some amazing solutions we would never think of. You can pay for a one hour consult with a lawyer and ask what it would take to get full control of your mother's medical care. I feel so sad that you are still stuck with your mother's ongoing terrible treatment of you. There are several mothers in my family who have gotten their children to take care of them and endured similar abuses like what you have been describing for many years. Each case is unique in its own way, and all I am saying is never say never, as that prevents there being solutions being found in what seem to be the most hopeless of situations.

[Methuen]

Oh wow.  Good to know Zachira.  Thanks for the heads up.  I will start looking into that once the holiday is over and I can start getting appointments again.

[FeelingStuck]

Methuen, I came across this post as I was reading back through the posts from Christmas. Our mothers have several medical issues in common. Something you said struck me — you mentioned your mothers' Meniere's disease. My own mom was diagnosed with this around 3 or 4 years ago, right around the time I finished college and moved to another city. It always struck me that I would hear about her 'Meniere's attacks' during times when she was trying to get ahold of me or shame me for not living with her to take care of her. The attacks have also happened on occasion while I'm visiting her. I've wondered for years whether a combination of my mom's anxiety and depression, as well as lack of exercise or constructive socialization with others, has either manifested or worsened her physical illnesses. Meniere's attacks occurring as a result of heightened anxiety, like panic attacks, makes a lot of sense to me.

Thank you for sharing your story. I hope you're doing alright and finding joy for yourself given the circumstances.

[Methuen]

Something you said struck me — you mentioned your mothers' Meniere's disease. My own mom was diagnosed with this around 3 or 4 years ago, right around the time I finished college and moved to another city. It always struck me that I would hear about her 'Meniere's attacks' during times when she was trying to get ahold of me or shame me for not living with her to take care of her. The attacks have also happened on occasion while I'm visiting her... Meniere's attacks occurring as a result of heightened anxiety, like panic attacks, makes a lot of sense to me.

Hi FeelingStuck.  Yes yes and yes.  It makes sense to me your mom's Meniere's flared up when you moved to another city.  My mom's Meniere's or reported dizzy symptoms will flare up when she is most stressed.  Your mom would have likely been stressed in the time leading up to your move to a different city.  You mention that she tries to shame you for not living with her and taking care of her.  She undoubtedly suffers from abandonment issues, so her vertigo problems around the time of your move fits.  It's probably the physical manifestation of her emotional state of mind.  There have been lots of threads with observations on this site over the years about a possible connection between BPD and Meniere's.  My mom has gone years at a time wearing a Transderm gravol patch.  I think it's emotional.  She's been wearing them now again for probably 6 months.

The reason the attacks happen when you're visiting her (rather than when you are leaving because of a move) probably has something to do with her emotional need for attention when you are there.  There's likely always got to be a crisis right?  The Meniere's symptoms when you are visiting will probably require you to do more for her, and check on her, nurse her etc etc.  When my mom texted me to tell me she was dizzy, I was supposed to drop everything and run to help her with everything.  Honestly, for years I was blind to all this.  With a lot of work over the past few years, I have come to see it for what it is.  That being said, vertigo can't be faked.  It is real.  But in my experience, the vertigo from the Meniere's and all the other medical afflictions our pwBPD has (my mom has dozens) feeds the victim perspective, and demands attention from others in the form of physical and emotional support while they are symptomatic.

Does all this fit for you? 

I'm doing OK thanks for asking.  My mom is doing terribly.  Waif like doesn't even begin to describe the situation.  She doesn't even have the muscle tone to sit up on her couch anymore when we are visiting.  She slumps over sideways or backwards (like she's going to slide off the bottom of the couch).  She still gets drops in her eyes, but refused home care to give them to her.  So home care came up with a device to help her distribute them herself with homecare watching and assisting.  It didn't work.  She was squeezing the whole bottle into her eye, and sometimes the wrong eye.  She has Parkinson's (which she refuses to take medication for) and advancing dementia.  She hates having home care come into her house.  I believe it's about a loss of control.  Some of her friends have stopped coming to visit (my theory is that she is too demanding of them).  She uses everyone who comes to do everything for her.  Except for home care - she tells them to leave.  They know what is happening.  It's all horrible, but it's all evolved this way because of her choices.  My T agrees she is self-sabatoging.  She had the opportunity to go on a list for assisted living almost 3 years ago and refused.  Currently she is denying consent for home care to call me when there is a problem.  As if she can hide it...  Yesterday one of them called me anyway and told me so...

Still, I am doing OK because I have set up boundaries.  After Christmas, I came out of retirement and returned to work.  It was easier than dealing with her.  It set a strong boundary because I was "unavailable" to her.  When I told her I was going back to work, she flew into a rage so intense she may have crossed the boundary to insanity with her emotions.  Work has been good for me.  I enjoy it, and I am no longer in my mother's clutches.  I only see her once a week on the weekend, and my husband is always with me, so she can't abuse me.  She isn't abusive when someone else is present.  Like your mom, she tries to shame me because I'm not "taking care of her".  She did this today when my H went to the bathroom.  It used to really upset me, but I've grown, and now it's water off a ducks back.

You mentioned you moved away after college.  I think this is super healthy.  In hind sight, I should have too.  Instead, I was offered my first job after university back in my home town where I met my H at work, settled down, got married, had kids and raised them, all while dealing with the demands and behaviors of a BPD mother who I thought was "normal". When my dad got sick and died, her abandonment was acutely triggered, and my life changed.  I was an only child, and I did my best to try to "fill her up".  We all know now that this isn't possible.  The harder I tried, the more abusive she became.  Now in her old age, she is decrepit and I believe incompetent, but home care doesn't see the BPD - they just see an old lady who is struggling.  Actually it was a blessing I moved back home because I met my H, who is the best H for me possible.  Having him by my side and the children we have makes having her as a mother worthwhile. 

Despite her, I am doing OK because of the boundaries, and because I am living my own life, and letting her live hers with the consequence of her choices.  I keep LC, and still support behind the scenes with banking, home care arrangments, appointments etc etc. I used to do her grocery shopping but my H does that now that I have gone back to work (he is retired).  He is OK with this, and knows how to handle her.  She is unsuccessful at manipulating him.

But you are right to connect the dots between the Meniere's and the timing with the BPD behaviors.  Good one.  You figured it out when you are still young.  Good for you.  I was a slow learner.  I'm now 60.  So much I could have done differently if I had the awareness sooner - like you have. Keep up the good work. 

[Notwendy]

Hi Methuen- I am glad for you that work has been fulfilling and also a boundary for you.

[FeelingStuck]

Methuen:

Yes, everything you're saying about Meniere's and the physical manifestation of the emotional problems definitely fits for me! It's oddly comforting to know I'm not alone in dealing with this. Of course, the symptoms feel real for our mothers, but I can't help but feel resentful when those symptoms are turned into an excuse for her FOG-ing me. All my life, I've had to explain to others that my "mom has had a lot of health problems" and leave it at that, thinking but not stating the effect it's had on me.

Crazily, the stress from dealing with her has a physical impact on me, too. If I spend extended periods of time in contact with her, like texting or visiting her, my whole day becomes about her and I feel the stress in my body. I lose the time or motivation to work out, which makes me tired and irritable, which in turn makes it harder to handle interactions with her with tact. So, my plan for now is to see how long I can go without going to stay at her house again, or getting involved in long text or phone conversations, and prioritize taking care of myself.

I am an only child, too! While my dad is still alive, he and my mom have been divorced since I was in middle school. Definitely know what you're talking about in regards to the unsuccessful attempts to fill my mom's needs. I'm still young, and establishing my personal and professional life and my own intrinsic sense of self-worth. So, my mom's words still hurt me pretty easily. Hopefully in time I'll have the ability, like you, to brush off her accusations and self-pitying statements so that spending time with her is less burdensome emotionally.

Does the gravol patch help your mom when she uses it? According to my mom, her doctor hasn't given her any solutions, aside from telling her to eat less salt, because that aggravates Meniere's. Next time she has an attack, I might suggest the gravol patch, or that she ask her doctor about other medications for reducing nausea.

I'm so sorry to hear about your mom's physical state and the pain it causes you. It sounds like the future that is in store for my own mother, too. She has had multiple back surgeries to resolve compressed discs in her spinal cord, and every time, she gets weaker and ends up with more back pain. Every time I see her, I try to encourage her to do routine physical therapy or light exercise, but that motivation just doesn't stick if it comes from someone other than herself.

I think you're right that your mom is self-sabotaging, and you have to let her face the consequences of her own actions. No person can be entirely responsible for everything in another person's life (with the exception of a parent or guardian raising a young child). While you've tried to ensure she is taken care of, you can't force her to accept the help she won't receive. I think you're also right that your mom is refusing care that you arrange for her because it is a form of lost control. The home care folks perhaps are still on 'guest status' in her mind, so she can't abuse them the way she does you, or her other friends.

Good for you to set up the boundaries including going back to work! I hope when you do retire for real, you will still be able to maintain the boundary with seeing her on a reduced schedule. It sounds wonderful that you are surrounded by a loving husband and children, and your husband is willing to help logistically. If my current boyfriend and I have a long-term future together, I hope we can settle into the kind of arrangement you have found to manage my mom along clearer boundaries.

Like yours, my mom is most abusive to me when it's just the two of us alone together. My boyfriend's 'guest status' has diminished—I think because we visited her for a few weeks at a time while working from home due to COVID. So, now my mom now feels somewhat comfortable voicing her typical abuses in front of him, too. The good thing is, he can stick up for me. But since he's started doing that, she now harps on "Why can't we spend alone time together? I don't think you like me, you never want to spend time with me. Let's just have some me and you time, like when you were younger. I just want us to have the same good relationship we used to have, and it's like you don't want one at all. Won't you promise just to visit me without him?" That line of questioning has been super hard to deal with, of late.

[Methuen]

I can't help but feel resentful when those symptoms are turned into an excuse for her FOG-ing me. All my life, I've had to explain to others that my "mom has had a lot of health problems" and leave it at that, thinking but not stating the effect it's had on me.

Exactly.  They know nothing of our experience, but many of them think they know everything there is to know, which translates to no one being able to understand our lived experience is very different than their perceptions of our mother.

Crazily, the stress from dealing with her has a physical impact on me, too. If I spend extended periods of time in contact with her, my whole day becomes about her and I feel the stress in my body. I lose the time or motivation to work out, which makes me tired and irritable, which in turn makes it harder to handle interactions with her with tact. So, my plan for now is to see how long I can go without going to stay at her house again, or getting involved in long text or phone conversations, and prioritize taking care of myself.

This is a great start FeelingStuck.  You can see how that works out.  The "for now...to see how long I can go without going to stay at her house again" part may need some refinement or stronger boundaries in the future.  I live in the same town as my mom, so this was difficult to impossible.  There just aren't words to describe what that was like.  Eventually, the only way "out" for me was to go back to work (from retirement).  It sounds like you live a greater distance from your mom, so maybe shorter and less frequent visits will have to do.  We both know that won't be good enough for her.  Whatever they get, it's never good enough.  The best thing is to accept that, as a fact without emotion (kind of like a health care worker would because they have no emotional encumbrances), and move on.

For me, something I had to learn to do was emotionally detach from her.

I'm still young, and establishing my personal and professional life and my own intrinsic sense of self-worth. So, my mom's words still hurt me pretty easily. Hopefully in time I'll have the ability, like you, to brush off her accusations and self-pitying statements so that spending time with her is less burdensome emotionally.

Yes.  A 3 pronged approach helped me: this community, my T, and my H's support.  I invited him to come to my T appointments with me, as I thought it would be good for him to hear about BPD and managing it from a professional. He's an analyzer type, and I believed it would be more objective coming from a T who also has "expertise".

Does the gravol patch help your mom when she uses it?

Good question!  Mom believes it works.  That's all that matters.  I believe it's a crutch for her.  If it's possible to be addicted to them, I think she could be.  On the other hand, the patch does remediate symptoms of course, but does she really have symptoms for 2-3 years?

She has had multiple back surgeries to resolve compressed discs in her spinal cord, and every time, she gets weaker and ends up with more back pain. Every time I see her, I try to encourage her to do routine physical therapy or light exercise, but that motivation just doesn't stick if it comes from someone other than herself.

Exactly.  My mom would do her PT if someone babysat her while she was doing it, because then she would be getting a ton of time and attention.  But even when she was younger (she had her first of 4 surgeries 15+ years ago before she was 70), she couldn't be bothered to do PT.  It wasn't "fun" or immediately gratifying in any way.  If it didn't serve her needs in the moment (eg to do something fun), she wasn't going to do it.  I don't believe she ever had the mental capability (executive brain function) to do something because she should or because it would be better for her in the future.  She has never been able to see consequences, or anticipate them, or show any interest.  She was accident prone her whole life.  That part of her brain just wasn't wired up to do what it was supposed to. So now she's decrepit, and of course it's everyone elses fault.

I think you're right that your mom is self-sabotaging, and you have to let her face the consequences of her own actions.

Thank you for this.  I mean really thank you. It means a lot.  I think her home health care workers may be losing their guest status.  Last Friday one came to help her with her eye drops, and mom told her to get out (more likely get the H_ _ _ out of my house).  I'm getting the vibes that home care is starting to see the "real" woman - at least on occasion.

I hope when you do retire for real, you will still be able to maintain the boundary with seeing her on a reduced schedule.

I hope so too.  There will be a precedent from my work schedule, so I think that will help.  The challenge is that I've always been the "helper type" and even got this job from the volunteer work I have done, so it will really be hard to maintain boundaries.  There is so much pressure from society and people who really "don't get it", and I just seem to be built to care for other people.  Of course I want my mom to be happy.  But she's sabatoged that too.  

...and your husband is willing to help logistically. If my current boyfriend and I have a long-term future together, I hope we can settle into the kind of arrangement you have found to manage my mom along clearer boundaries.

I hope so too.  This actually made me laugh.  My H would be the first to admit that he's better off to help with the logistics, than to deal with a chronically distraught and frustrated wife.  That aside, he's solid and amazing.  Quite unemotional about it all, which is exactly what is needed.

...she now harps on "Why can't we spend alone time together? I don't think you like me, you never want to spend time with me. Let's just have some me and you time, like when you were younger. I just want us to have the same good relationship we used to have, and it's like you don't want one at all. Won't you promise just to visit me without him?" That line of questioning has been super hard to deal with, of late.

Yep.  OMG yes.  And it's relentless.  And in my experience, as they age, their physical, emotional, and cognitive issues increase, it only gets worse.  

The safest thing to do, is keep a distance, and get on with your own life.

I wish we could go out for coffee or a walk FeelingStuck.  But this will have to do Thanks for bringing up the thread again.  Getting connected is a win -win  

[FeelingStuck]

Methuen, likewise I feel happy that we connected over this! Sending you support from (probably) afar!